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#1 susieq40


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Posted 11 January 2010 - 11:49 AM

Dear Everyone,

Happy New year! I hope this year brings warmth and wellness to many! I was newly diagnosed in June, and started on cyclophosphamide in Sept.and only once a month doses. Was wondering how this treatment has gone for others? I feel absolutely wore out the first week, then feel pretty good for two weeks and then the week before the next treatment just draging tired, and my skin hurts again. Also having cramping in my hands and feet, but mostly in my feet. Long painful cramps. Anyway, After your bout of cyclophosphamide treatment, what did the doctor's do for you, what kind of results have you seen, if any?
How do you feel on maintenance medication like cellcept? Just a wondering what I have to look forward to? This has been quite the experience. My next catscan and lung function tests should be in February...I'll let everyone know how that goes.

Warm Hugs to All

#2 Joelf


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Posted 12 January 2010 - 09:06 AM

Hi Susie

Coincidentially I have just done a long post on the UK forum under 'Lung Function Tests' HERE describing the excellent result I have had after 6 infusions of IV Cyclophosphamide.

After each treatment I felt as though I had a mammoth hangover, probably because the Cyclophosphamide reacts with enzymes produced by the liver & after the last 2 treatments I felt rather sick despite the anti-sickness drug. It's also very important to drink continuously during & after the treatment as the drug can have a rather nasty effect on the bladder. mellow.gif

But the results of my last lung function tests are nothing short of miraculous so I feel that a few unpleasant side effects are well worth the final result!! wink.gifsmile.gif Obviously different people react differently to the same medication & I have been fortunate that my lung fibrosis included a lot of inflammation which was reversible & also my lungs were in pretty good shape before Scleroderma damaged them so that helped!! wink.gif I am just about to start on Azathioprine which I'm not ecstatic about taking but I have complete confidence in my consultants so if they say 'Jump', I say 'How high?'! biggrin.gif

I do hope that my experience with the Cyclophosphamide treatment will encourage you. :hug-bear:

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#3 susieq40


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Posted 12 January 2010 - 04:59 PM

Dear Joelf,

I too haven't had too bad of an experience of side effects of cyclophosphamide. I'm just hoping it helps, I haven't really noticed a difference yet. I go through all the breathing tests and a CTscan again on Feb 23rd. That will make only 6 doses. I also have PH, inflammatory bowel disease, and had reflux, and the Raynauds. I've had the lung disease part they think for at least 3 years, and they think my lungs are pretty scarred up. Which worries me since my breathing really hasn't improved, yet. But I keep up hope. Thanks for the info, I can use all I can get.

Thanks :thank-you:




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Posted 12 January 2010 - 06:57 PM

I was diagnosed in March of 2005 at Cleveland Clinic. I was told that I was the worst Sclero patient they had ever seen. I was treated there until August of 2008 when I entered into a clinical trial headed by Duke University-high dose cyclophosphamide vs. total body eradication stem cell transplant. I was chosed for the cyclophosphamide arm of the study. So from August of 2008 until June of 2009, every 4 weeks I traveled 5 hours to Milwaukee Wisconsin to have my dose of cyclophosphamide. I was never sick, never lost my hair. My skin has become some softer but I can now put my arms above my head and almost stretch to 180 degrees when I put them to my sides. I have a bit more energy, some more mobility with my fingers and toes.